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Observational Study
. 2023 Jul;37(7):984-992.
doi: 10.1177/02692163231170656. Epub 2023 Apr 23.

Iatrogenic suffering at the end of life: An ethnographic study

Laura Green  1 , Andrea Capstick  2 , Jan Oyebode  2
Affiliations
Observational Study

Iatrogenic suffering at the end of life: An ethnographic study

Laura Green et al. Palliat Med. 2023 Jul.

Abstract

Background: Across the developed West, a significant proportion of older people die in hospital It has been argued that an acute hospital setting is not well equipped to support dying well. A palliative approach, which involves recognising and alleviating suffering, might lead to improved quality of care. Yet suffering is an intangible and contested phenomenon and little is known about people's actual experiences of suffering in this clinical setting.

Aim: To examine the context of end-of-life care for older people in an acute hospital setting, particularly focusing on the experience of suffering.

Design: An observational study, using an ethnographic approach. Data analysis was inductive and iterative. Reflexive analysis included observations and inferences from a participant-observer perspective. Over a period of 3 months in 2016, 186 h of observations of clinical care were carried out.

Settings/participants: The study was carried out on a 30-bedded acute older peoples' hospital ward in the United Kingdom. Participants included 11 patients and 33 members of staff and visitors.

Results: Patient suffering was influenced by a range of factors. Delays in recognising and acknowledging dying often led to treatments that were burdensome or futile, exacerbating patient suffering. This was frequently associated with clinical decision-making that did not take into consideration long term concerns such as prognosis or quality of life. Environmental factors in the physical clinical setting such as noise and smell also exacerbated suffering. Finally, aspects of interpersonal interactions, such as paternalistic attitudes or ineffective communication, affected patient experience.

Conclusion: Acute care for older people in hospital was shaped by an overarching ideology of rescue which predicted and dictated the process of care. Suffering was not restricted to the direct experiences of life-limiting illness but was also associated with the experience of receiving care in an acute hospital setting. Avoiding or minimising iatrogenic suffering is an essential component of compassionate care.

Keywords: End of life; empathy; palliative care.

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Conflict of interest statement

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

    1. National End of Life Care Intelligence Network. Local Preferences and place of death in regions within England 2010. London: National End of Life Care Intelligence Network, 2011.
    1. Parliamentary and Health Service Ombudsman. Dying without dignity. Investigations by the Parliamentary and Health Service Ombudsman into complaints about end of life care, London: HMSO; 2015.
    1. Parliamentary and Health Service Ombudsman. Care and compassion? Report of the Health Service Ombudsman on ten investigations into NHS care of older people, London: HMSO; 2011.
    1. Palliative and End of Life Care Priority Setting Partnership. Top ten priorities, James Lind Alliance; 2015.
    1. Department of Health. Hard truths: the journey to putting patients first, London: HMSO; 2014.

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